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By JANE GROSSCHICAGO — John Holloway received a diagnosis of AIDS nearly two decades ago, when the disease was a speedy death sentence and treatment a distant dream.

Yet at 59 he is alive, thanks to a cocktail of drugs that changed the course of an epidemic. But with longevity has come a host of unexpected medical conditions, which challenge the prevailing view of AIDS as a manageable, chronic disease.

Mr. Holloway, who lives in a housing complex designed for the frail elderly, suffers from complex health problems usually associated with advanced age: chronic obstructive pulmonary disease, diabetes, kidney failure, a bleeding ulcer, severe depression, rectal cancer and the lingering effects of a broken hip.

Those illnesses, more severe than his 84-year-old father’s, are not what Mr. Holloway expected when lifesaving antiretroviral drugs became the standard of care in the mid-1990s.

The drugs gave Mr. Holloway back his future. But at what cost?

That is the question, heretical to some, that is now being voiced by scientists, doctors and patients encountering a constellation of ailments showing up prematurely or in disproportionate numbers among the first wave of AIDS survivors to reach late middle age.

There have been only small, inconclusive studies on the causes of aging-related health problems among AIDS patients. Without definitive research, which has just begun, that second wave of suffering could be a coincidence, although it is hard to find anyone who thinks so. Instead, experts are coming to believe that the immune system and organs of long-term survivors took an irreversible beating before the advent of lifesaving drugs and that those very drugs then produced additional complications because of their toxicity — a one-two punch.

“The sum total of illnesses can become overwhelming,” said Charles A. Emlet, an associate professor at the University of Washington at Tacoma and a leading H.I.V. and aging researcher, who sees new collaborations between specialists that will improve care.

“AIDS is a very serious disease, but longtime survivors have come to grips with it,” Dr. Emlet continued, explaining that while some patients experienced unpleasant side effects from the antiretrovirals, a vast majority found a cocktail they could tolerate. “Then all of a sudden they are bombarded with a whole new round of insults, which complicate their medical regime and have the potential of being life threatening. That undermines their sense of stability and makes it much more difficult to adjust.”

The graying of the AIDS epidemic has increased interest in the connection between AIDS and cardiovascular disease, certain cancers, diabetes, osteoporosis and depression. The number of people 50 and older living with H.I.V., the virus that causes AIDS, has increased 77 percent from 2001 to 2005, according to the federal Centers for Disease Control, and they now represent more than a quarter of all cases in the United States.

The most comprehensive research has come from the AIDS Community Research Initiative of America, which has studied 1,000 long-term survivors in New York City, and the Multi-Site AIDS Cohort Study, financed by the National Institutes of Health, which has followed 2,000 subjects nationwide for the past 25 years.

The Acria study, published in 2006, examined psychological, not medical, issues and found unusual rates of depression and isolation among older people with AIDS.

The Multi-Site AIDS Cohort Study, or MACS, will directly examine the intersection of AIDS and aging over the next five years. Dr. John Phair, a principal investigator for the study, which has health data from both infected and uninfected men, said “prolonged survival” coupled with the “naturally occurring health issues” of old age raised pressing research questions: “Which health issues are a direct result of aging, which are a direct result of H.I.V. and what role do H.I.V. meds play?”

The MACS investigators, and other researchers, defend the slow pace of research as a function of numbers. The first generation of AIDS patients, in the mid-1980s, had no effective treatments for a decade, and died in overwhelming numbers, leaving few survivors to study.

Those survivors, like Mr. Holloway, gaunt from chemotherapy and radiation and mostly housebound, lurch from crisis to crisis. Mr. Holloway says his adjustment strategy is simple: “Deal with it.” Still he notes, ruefully, that his father has no medical complaints other than arthritis, failing eyesight and slight hearing loss.

“I look at how gracefully he’s aged, and I wish I understood what was happening to my body,” Mr. Holloway said during a recent home visit from his case manager at the Howard Brown Health Center here, a gay, lesbian and transgender organization. The case manager, Lisa Katona, could soothe but not inform him. “Nobody’s sure what causes what,” Ms. Katona told Mr. Holloway. “You folks are the first to go through this and we’re learning as we go.”

Mr. Holloway is uncomplaining even in the face of pneumonia and a 40-pound weight loss, both associated with his cancer treatment. Has the cost been too high? He says it has not, “considering the alternatives.”

Halfway across the country, Jeff, 56-year-old New Yorker who was found to have AIDS in 1987, said he asks himself that question often.

Jeff, who asked that he not be fully identified, has had one hip replacement because of a condition called avascular necrosis, the death of cells from inadequate blood supply, and needs another to avoid a wheelchair. Many experts think that avascular necrosis is caused by the steroids many early AIDS sufferers took for pneumonia.

“The virus is under control, and I should be in a state of ecstasy,” he said, “but I can’t even tie my own shoe laces and get up and down the subway stairs. ”

His bones are spongy from osteoporosis, a disorder that afflicts many postmenopausal women but rarely middle-aged men, except some with AIDS. No research has explained the unusual incidence.

In addition, Jeff has Parkinson’s disease, which is causing tremors and memory lapses.

He is in an AIDS support group at SAGE, a social service agency for older gay men and lesbians. His fellow group members also say they find the illnesses associated with age more taxing than the H.I.V. infection. One 69-year-old member of the group, for example, has had several heart attacks and triple bypass surgery, and his doctor predicts that heart disease is more likely to kill him than AIDS.

Cardiovascular disease and diabetes are associated with a condition called lipodystrophy, which redistributes fat, leaving the face and lower extremities wasted, the belly distended and the back humped. In addition, lipodystrophy raises cholesterol levels and causes glucose intolerance, which is especially dangerous to black people, who are already predisposed to heart disease and diabetes.

At Rivington House, a residence for AIDS patients on the Lower East Side of Manhattan, Dr. Sheree Starrett, the medical director, said that neither heart disease nor diabetes was “terribly hard to treat, except that every time you add more meds there is more chance of something else going wrong.”

Statins, for instance, which are the drug of choice for high cholesterol, are bad for people with abnormal liver function, also a greater risk among blacks. Many AIDS patients have end-stage liver disease, either from intravenous drug use or alcohol abuse. Among Dr. Starrett’s AIDS patients is 58-year-old Dominga Montanez, whose first husband died of AIDS and whose second husband is also infected.

“My liver is acting up, my diabetes is out of control and I fractured my spine” because of osteoporosis, Ms. Montanez said. “To me, the new things are worse than the AIDS.”

There are no data that compare the incidence, age of onset and cause of geriatric diseases in the general population with the long-term survivors of H.I.V. infection. But physicians and researchers say that they do not see people in their mid-50s, absent AIDS, with hip replacements associated with vascular necrosis, heart disease or diabetes related to lipodystrophy, or osteoporosis without the usual risk factors.

“All we can do right now is make inferences from thing to thing to thing,” said Dr. Tom Barrett, medical director of Howard Brown. “They might have gotten some of these diseases anyway. But the rates and the timing, and the association with certain drugs, makes everyone feel this is a different problem.”

One theory about why research on AIDS and aging has barely begun is “the rapid increase in numbers,” Dr. Emlet said. The federal disease centers’ most recent surveillance data, from 33 states that meet certain reporting criteria, showed that the number of people 50 and older with AIDS or H.I.V. infection was 115,871 in 2005, nearly double the 64,445 in 2001.

Another is the routine exclusion of older people from drug trials by big pharmaceutical companies. The studies are designed to measure safety and efficacy but generally not long-term side effects.

Those explanations do not satisfy Larry Kramer, founder of several AIDS advocacy groups. Mr. Kramer, 73 and a long-term survivor, said he had always suspected “it was only a matter of time before stuff like this happened” given the potency of the antiretroviral drugs. “How long will the human body be able to tolerate that constant bombardment?” he asked. “Well, we are now seeing that many bodies can’t. Once again, just as we thought we were out of the woods, sort of, we have good reason again to be really scared.”

The lack of research also limits a patient’s care. Dr. Barrett says the incidence of osteoporosis warrants routine screening. Medicare, Medicaid and private insurers, however, will not cover bone density tests for middle-aged men.

Marty Weinstein, 55 and infected since 1982, has had a pacemaker installed, has been found to have osteoporosis, and has been treated for anal cancer and medicated for severe depression — all in the last year. He also has cognitive deficits.

A former professor of psychology in Chicago, he presses his doctors about cause and effect. Sometimes they offer a hypothesis, he said, but never a certain explanation.

“I know the first concern was keeping us alive,” Mr. Weinstein said. “But now that so many people are going to live longer lives, how are we going to get them through this emotionally and physically?”

quote: "... doctors and patients encountering a constellation of ailments showing up prematurely or in disproportionate numbers among the first wave of AIDS survivors to reach late middle age.".......................It is scary David. No doubt about it. Kurt just turned 50 and is one of the youngest people to have a knee replacement done at Pennsylvania Hospital....and the only HIV positive one.

This is a very interesting article, Philly. Thanks for copying it here. I have been diagnosed with osteoporosis (I'm 42), high cholesterol and diabetes. The first two within the last two years. Yes, I wonder how long we are going to go wandering around in the dark about the long-term effects of the meds, since obviously there are no studies being done on it. I'm sure all our livers are over-taxed.

Very interesting read. Thanks.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

As long-term survivors no one one has to tell us we are just whistling past the graveyard, but whacha gonna do? I guess I'll do what I did for the first ten years of diagnosis and just do my best to ignore it. Course that's easier said than done.

This is what scares me so much about Mini. She's been on these meds her entire life - 7 1/2 years. She's already been diagnosed with distal sensory neuropathy, delayed mylenization, now being tested for CIDP, diabetes, high cholesterol, high tryglicerides, whacky liver enzymes, learning disabilities, lypoatrophy (dx'd by "sight", having a DEXA scan and mitochondrial test on 1/11), CP. Not to mention the pneumonia that's left "scars" on her lungs, bouts of RSV, and 6 gram negative bacterial blood infections. We believed that once we got that undetectable diagnosis, she would be free and clear. Now, we know better and it truly saddens me. Knowing that the meds she takes to keep her alive are the same meds reeking havoc are her little body is very hard as a parent. We'll discuss changing some of her meds to less toxic ones, but there's no such thing as non-toxic meds. And, she can't get back what she's lost. It's one heck of a decision to make. I'm glad someone is finally bringing this to public attention. I agree with Jan. It makes me so angry to hear young people talk about how HIV is no big deal because they'll just take meds and live forever. I wish they could live a day in Mini's shoes.

And the hits just keep comin... I was recently told I have Osteopenia after a BMD test was performed when my Endocrinologist saw I had a broken foot. So now I pay attention when Sally Field is pushing Boniva(it's more expensive than Fosamax and Actonel) on TV. I'm on Actonel.

I guess I should go to the DR with my elderly Dad who has many of the same ailments mentioned in the article and that I am on the precipice of having. Talk about a weird way for father/son bonding.

Well I have to say that as a newly diagnosed HIV + individual, this article is very depressing. Is this the future I have to look forward to? I started on meds immediately after diagnosis, thinking that it would be the best thing to attack the virus right away. But now I get the displeasure of having my body fall apart on me as I go through middle age? I'm only 28, my father is 56, I often times think we'll end up dying around the same time.

For us newly-diagnosed, does the future for our bodies look a bit brighter? The meds taken today are less toxic (though still tough on the body) and supposedly newer and less toxic drugs keep coming out (isentress, prezista, etc....). For all you long-term survivors out there, I know you had to all take some very toxic stuff and I appreicate what doctors have learned through your suffering. I cannot thank you enough for that.

I would like to have the honest opinion, of any long-term survivor in here, if a newly diagnosed person in their 20s will face much of the same problems mentioned in this article, or does the fact that drugs are less toxic today help mitigate the long-term issues? I started meds immediately after seroconversion, so my immune system rebounded almost immediately and I don't believe any material damage was done in that regard. But if my fate is to be like the people cited in this article, as hard as it is to hear, I'd like to know now, so I have time to mentally prepare, rather than be caught off guard sometime in the distant future.

I know no one can predict the future, especially for someone they don't know. But any opinions from anybody here would be of help to me.

I know for a fact that I can atribute many of my health issues today to AZT.

I know that the early days of AZT caused me (and many others) a ton of problems. That's when my PN started-after being megadosed on the AZT. And that's also when I had to get a blood transfusion because the AZT caused me hemoglobin to drop to 2. They didn't know how to prescribe it.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Patrick, there's no way to answer your question. I think it's safe to say that newer meds are less toxic than the first generation ones, but how much so they won't know for another 10-15 years. And if there are problems down the road, the medical community will still have "later stage" toxicity issues more under control than they do now, for the simple reason that medicine will have advance yet a further 10-15 years.

It's hard to say how "today's drugs" will affect people after long term use....so in effect, all of us on HIV meds are kinda like "guinea pigs". I've gotten quite used to that.

BTW, no one starts out on Isentress do they? I know for a fact that I can atribute many of my health issues today to AZT.

Remember that song "Hello Mary Lou......Goodbye Heart"?

For me it was "Hello AZT......Goodbye Face."

Sorry to hear about your AZT experience. I've heard that it is a pretty terrible drug. I am on Truvada and Kaletra. Not as toxic as AZT I'm sure, but not exactly like taking a Flintstone vitamin either. Apparently one long-term survivor on here has his doctor attributing his recent diabetes diagnosis to 8 years of Kaletra therapy. When I read stuff like that it scares the hell out of me. I'm thin, run two or three times a week, lift weights four times a week and eat well. I hope this is enough to keep me healthy long-term. No one knows.

I am on Truvada and Kaletra. Not as toxic as AZT I'm sure, but not exactly like taking a Flintstone vitamin either. Apparently one long-term survivor on here has his doctor attributing his recent diabetes diagnosis to 8 years of Kaletra therapy. When I read stuff like that it scares the hell out of me. I'm thin, run two or three times a week, lift weights four times a week and eat well. I hope this is enough to keep me healthy long-term. No one knows. Thanks for the replys everyone, as always.

Patrick,I used to believe that my first ID specialist was an asshole because he dismissed my cmpleaints about Crixivan, then AZT, then Viracept with "Well, you are on oral chemotherapy. What did you expect?" About five years ago, after seeing so much havoc wrought in the lives of HIVers by HAART, I sent him a note of apology. Kaletra is, indeed, a noxious drgu with a multitude of possible adverse consequence; yet, doctors keep presribing it because they either don't know better or do not involve patients in making choices about their care. Truvada is two nukes, so why not a less troublesome non--nuke such as Viramune? I have several friends who have moved to that combo and find the hit on the GI tract and triglycerides to be miniscule compared to Kaletra.

Wow, an interesting article and good discussion. This touches us on so many levels.

Patrick, regarding your decision to start now rather than wait for things to fall apart and then start meds, nobody can say what will happen in 10-15 years.

I would just offer this tidbit: Keep and eye on your lipids and if you can't get them under control, tell the doc you want to switch to a more lipid-friendly PI. Reyataz is one possibilty.

Regarding the Viramune, it is a great drug, but has drawbacks for those men whose CD4s are above 400 and women whose CD4s are above 250.

This usually applies to people starting meds for the first time, but I have heard discussion of problems with those who have relatively high CD4s, say more than 1,000, who switched to Viramune and then had liver issues.

It could be just idle banter though. I can't find any clinical data to back that up.

I have taken AZT for nearly 12 years now. I do have some lipoatrophy. Is it the AZT or the 11 years on Crixivan? Who knows?

I didn't start seeing signs of lipohypertrophy until I quit smoking and gained weight (30 pounds). So, is it the weight gain combined with the meds? I don't know.

I am glad to see this article and the discussion here. Thanks for redirecting me to this thread.

I have been advocating for some time about the need for surveillance of long-term survivors and their health care issues. My doc read this article over the weekend and after I wrote last week to tell him that I am leaving his clinic after 10+ years because of the seemingly sole focus on cd4 and viral load and the lack of interest in the long-term effects of my meds. After reading this article, he seems to "get it" and will be more open to future patients.

I have renal insufficiency, diabetes, risk of stroke, risk of heart attack, neuropathy, arthritis, extreme fatigue, lipoatrophy, a lipoma and depression (that came from not being heard when talking about the other issues). At least for the depression, I could and did act to take back as much of my power as I can and I feel better now with the hope of a new start in a new clinic for myself and with the hope that future patients at my old clinic will get better care. I am 48 years old and have more in common with my 82 year old mom than with anyone I know in their 40s.

It is probably impossible to find answers about the differences between newly diagnosed patients and long-termers where prognosis is concerned. The studies have not been done to consistently evaluate long-term effects and it isn't even clear to me that the pharma industry and the medical establishment have been closely collaborating to collect data on emerging side effects. Most often, when I mentioned side effects, people in my clinic got a glassy-eyed look and were clearly not interested. I have no idea if they even documented my side effects.

Most often, when I mentioned side effects, people in my clinic got a glassy-eyed look and were clearly not interested. I have no idea if they even documented my side effects.

I know what you mean, tuggem....it's almost as if complaints about side effects from LTSers are TOO big of an issue, so they would rather just avoid it than to try to deal with it.

I recently had an appointment with a gastroenterologist, and when I told him I was a 21 yr LTS of AIDS, nothing else I said after that point registered with him. It was as if "well you've lived this long, it's a gift, take it, shut up and be happy about it."

Maybe I am being unreasonable, but that is the impression I got, and he is not the only doctor that has done that to me.

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

When I read the Times article yesterday it definitely left me somewhat dispirited, and notwithstanding the Giants' playoff victory over Tampa Bay (sorry, you guys down there in Florida, but the jints are my team) I was still feeling a little down about my future until only a few hours ago.

We have all been guinea pigs regarding side effects over the years, and there are some doctors out there who seem to regard us as lesser human beings than they are. When I first tested positive in '88, the first ID specialist I consulted was such a callous ass that I wanted to smack him. The doc I settled on, and who has been my guy for 20 years, was the complete opposite - he cared then and he cares now. I think of him as a friend.

I've been more fortunate than most of us long-term surviviors; the only serious consequence of the alphabet soup of ARVs I've taken over the years was some osteopenia/osteoporosis a few years back, which is now apparently under control.

The only side effects that I now seem to be living with from the Atripla are the exotic dreams, which are kind of fun, but who knows? - 10 years from now we may out that Atripla causes your penis to fall off. But on the other hand, it beats the alternative.

I do wish that the drug companies and our doctors would all pay more attention to the long term damage that they may be inflicting on us. We still have a long way to go...

BTW, no one starts out on Isentress do they? I know for a fact that I can attribute many of my health issues today to AZT.

For me it was "Hello AZT......Goodbye Face."

"Luckily" I "lost" my face due to D4T, not AZT, which I avoided to the point of not treating at all my first 5 years after diagnosis. I am not on "salvage therapy" and am now on Insentress. So, I am not "new" on meds, but in one sense "Yes". I started Insentress + Truvada 2 days ago, when my CD4s dropped below 300. Since I have been off meds for 7 years and only took 3TC + D4T previously (5 years treatment) my available choices are much like those offered the treatment-naive,. Insentress has been great for "salvage therapy" patients, but can be used for others too. I am one.

For those of you wondering what organs we might be harming through treatment, especially watch the kidneys, and heart. I think i've read drinking lots of water helps the kidneys (makes sense), and I take a baby aspirin (82mg) daily for the heart. Both might benefit me.

On the one hand too many MDs have ignored patient complaints about side-effects, and on the other we sometimes focus on how we feel at the expense of recognizing damage we might not feel at all. Learning to interpret our "blood work" (I am just starting) is part of looking after our long-term health. I am a lot better off than most of the LTS poz featured in the NYT article, but I also got arthritis plenty young, maybe a decade ago. Old people tend to have lots of afflictions. HIVers often face this stage of life younger than our contemporaries. The old usually struggle on, some with real courage and the ability to focus on things past their illnesses or limitations. That's a good example for all of us here, no matter our age, or current health. .

Speaking of your heart, I just saw a piece on the the news that confirmed that vitamin D is critical to heart health and can reduce the risk of colon and breast cancer. As HIVers seem to be more susceptible to these problems, one would expect that we would benefit that much more by ensuring that we get adequate vitamin D from our diets and appropriate exposure to sunlight.

How true that we are guineapigs but also how dissapointing that we have to inform the doctors of side effects and being met with disbelief or denial. Good cd4's is basically like telling your motor runs, but they don't tell you the wheels might come off or the oil is burning or you have no head lights anymore.Over the years I informed my doctors of crixibelly, lipo, osteoporosis, irregular heartbeat, sinus problems that wake me up at night because I cannot breathe.I think it's a sad article and I'm going to send it to everyone I know so at least they'll be informed and then something good might come from it.

The NY Times article was excellent and brought home a number of issues facing long term HIV/AIDS survivors. I felt, after reading the article, a little depressed, however. Like many others here, mixed emotions surfaced--grateful to still be alive on the one hand but wondering at what cost? Quality vs. quantity of life.

Regarding the response noting paying attention to your labs--I have for the last 5 years paid very close attention to my labs. As soon as I get the report, I look for notations in the "Flag" column. A flag notation indicates a test result outside of what is considered the "normal" range. I have been extremely fortunate in that my reports over the last few years have had very few flags. This means, glucose, CD4, potassium, red blood counts, cholesterol, etc. are normal. Still, I worry sometimes about the cumulative effect of being HIV+ for 21 years, the meds I've taken, and the eventual toll it will have on my heart, liver, and kidneys along with the possibility of other ailments including depression. This is a very hard row to hoe, I have to tell you.

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"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

The discussion on this article underscores the importance and relevance of the POZ forums. It is great that the NYTimes highlighted the issue of AIDS/Aging for the general public, but for us LTS (as has been said in other posts), the conditions described in the article are not a surprise - even as the disease manifests itself in new ways. I have long thought that my various "side illnesses" seemed strangely akin to illnesses experienced by older people. Growing older with AIDS is clearly a challenge - both because of the nature of the resilient beast that is this disease and our culture's emphasis on youth and the prevalence of ageism. Still, as hard as it may be sometimes, I feel that I need to focus on the upside of living longer - living - and trying to live well and not on its downside.

I have learned to accept that there are no guarantees in life and that I am a guinea pig with all these medications. Three and one half years ago (at age 52), I was diagnosed with a cardiac disease called aortic stenosis (calcification of the aortic valve) that required open heart surgery. This was not a congenital disorder with me, and in non-congenital situations, aortic stenosis is most commonly found in elderly people. I went into cardiac arrest twice during the operation but somehow survived. In trying to explain what happened, my doctors thought that it was most likely that my Kaletra/Truvada (fairly new and unstudied in this context) might have adversely interacted with the anesthesiology drugs. Who knows? Was the underlying aortic stenosis caused or accelerated by the all those years of AZT, D4T, DDI, and Crixivan? Who knows? Now dated Crixivan was a life saver in 1996 to many of us and in my case unexpectedly sent my KS and the tumors in my chest into remission in the late nineties. Knowing what I know now I would take that one under similar circumstances even if it came with some Crix belly and higher lipids and glucose readings. Having seen so many friends die, I never imagined in the late eighties that I would live over 21 years with HIV. You do the best you can with the best information you can get and hope it works.

To the younger guys out there, yes, its harder to grow old gracefully with AIDS. Aging and AIDS taken alone represent a tall order - physically, psychologically, and societally. Still, I believe that the future is brighter than the past and that many of us are fortunate to live a quality of life that was not dreamed of ten years ago. Hopefully, with medical advances and more resources, an even better quality of life will be available to more people in the future. Think of from where we came.

I'm another one who is going to print this and take it when we go see the PID on Friday. It really pisses me off that we've been "complaining" about things since before Mini was a year old and it was ALWAYS written off as an "HIV thing". Well, considering she's had an u/d VL for 5 1/2 years, it's kind of hard to continue to blame it soley on her HIV. Looking back over her medical records, most of the "stuff" she's had issues with (other than direct OI issues) have come about after she became u/d (which happened 4mths after she started with her current meds). Yet, the virus continues to get blamed and we're looked at like we're crazy . I think every PID/ID doc should get a copy of this article.

I believe everyone would be interested in an article that appeared in the Washington Post, earlier this week regarding a discovery of over 200 proteins or enzymes that assist HIV replication. Several were previously known but others have just been newly discovered. The study has been hailed as a breakthrough for HIV prevention and enhanced infection control for those already infected with the potential for new therapies. Of course, as with all new discoveries, only time will tell us about the true benefits and side effects. Perhaps someone else on the board can speak more intelligently than I about this discovery or maybe move the responses to the Research News section.

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"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Philly thankyou for this thread. Wouldn't it be nice if doctors listened more to us long termers. I kind of find it insulting how many academics/doctors think that a low viral load means everything else in our life will automatically be alright as a result. My major problem is fatigue - a complaint that a 42 yr old should not have as a constant issue and I have complained about this for years. I have been insulted many times by them telling me I must not be eating right. I tell them I was eating "healthy" since I was a toddler and way before health food became a commercialised trend.... no reaction. Early 2000 I was part of a small group that was tested for drug resistance using DNA testing. My results showed I was immune to all drugs bar one type. This came as a shock and I was quickly put onto a regime that my body would accept. I thought to myself - how had I survived since 1988, lived through large celled non Hodgkin's lymphoma and maintained my health in terms of t-cells and viral load if my body was not reacting to any of those pills I was taking up until that time we were aware of my drug immunity. That question was never put forward so I was put on pills immediately that gave me cramps, bloat and fatigue. I got rid of the bloat by eating peppermint and my cramps vanished after a while as I adjusted to my pills. My fatigue remained. The past year I have noticed (more-so than previous years) that I cannot keep up with my friends with things like hiking, sand boarding or swimming. HIV is still an ongoing issue as this reality in terms of growing older and being aware that unknown effects from long term pill popping still may surface causes me concern. I'm sure we have all thought of stopping our pills at one stage just to live out our life span rather than opting for suffering unknown and longer term issues solely for scientific purposes. The desire for academic acknowledgement and a goal to be the first to achieve a global award drives research more than compassion does. It is not uncommon to find academics with high IQ's (usually identified by a government approved test or just ego based) lack greatly in other areas such as emotional intelligence or social understanding..... is it suprising that quality of life does not warrent any real action when up against statistical data showing lower viral loads due to pill intervention. Bottom line - research is only available due to $$$$ and Governments are little more than financiers loaning money. The equation is quite simple. Postive results means $$$$ well spent and a low viral load equates to a persons potential productivity while ignoring those other issues. The article Philly posted does bring to light the wider picture to future problems we may all have to face. I am not ready to say thankyou just yet for offering me pills when the social and emotional issues still remain. For me quality of life is still number one and travel is my ONLY personal salvation from stigma, loneliness, social boredom and poverty. I could not cope if I was not able to maintain that existence.

Well said, Hudstar. Sometimes I feel like quitting treatment, but then I remember the horrors of what happens when the t-cells dip to single digits etc. I guess I just try to take one day at a time, a tired old cliche I know, but dammit, I can't do it any other way.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

hello alli read this article too and was extremely glad that the nyt had investigated the issue as i am aware how tough it is for a lot, if not all, lts. im giving a talk to a group of generalist hospital doctors in a week and a half and this is going to be one of the topics i cover. hopefully the medical profession and the world at large will one day understand that the picture of hiv/aids isnt just about living or dying, it's about quality of life.

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

hello alli read this article too and was extremely glad that the nyt had investigated the issue as i am aware how tough it is for a lot, if not all, lts. im giving a talk to a group of generalist hospital doctors in a week and a half and this is going to be one of the topics i cover. hopefully the medical profession and the world at large will one day understand that the picture of hiv/aids isnt just about living or dying, it's about quality of life.

Hey Englishgirl, it would be good to hear about the talk you will be giving and hopefully you can post it here in the forums. I really think us LT are going to face a multitude of difficulties and our life will once again be up for scientific study. I understand we are the pioneers/lab rats that will make tracks for future consideration yet I don't want to spend my extended existance being sacrificial as quality of life degrades.

Sorry if I got your name wrong. I have been infected since 78 or 80 so I am one of the people that this article is talking about. As for me even a less than optimal life is life. It seems like every time I go to the doctor it is a new disease or pill to take. I love my life and enjoy my partner and my cat. Along with sereral friends all over the world. I can't travel well any more and some days are spent in bed because of illness. But on those days when it all comes together I feel like it is all worth it. I am able to do things that I like to do. Write, read, quilt, and cook. Generally I am still able with my team of doctors to deal with each new thing and keep the old ones under control. My qulaity of life is not what it was even 4 years ago. But I would be dissappointed if something came along that I could not manage. My life and my friends and the love that I feel as a human being make my life worth living even though it is not the most optimal. In my case quanity brings hope for quality. I have five life threatening diseases and on the 20th of this month I have an appointment to have test run to see if I have a genetic kidney disorder that killed both my mother and my older brother and that both of my sisters are suffering from. My older sister doesn't have to have dialysis yet. But my little sister has to have dialysis three times a week and it is devestating. But whn I talk to them they both agree taht life is worth while even in these conditions. I have horrible veins that collaps so I am not one that will have an easy time of it if I have to do dyalisis. But that will be just another price that I pay for being able to live my life and love and be loved. I can't speak for anyone but myself but that is what it is all about. Just being able to smile or joke and make someone else laugh Life is worth each and every moment.

Amen - Well said. I for one am not ready to push up daisies. As long as I have a heart and a mind (and am not in unmanageable and hopeless excruciating pain or advanced physical deterioration), I will do my best to stay alive, whatever comes my way. And I believe that it doesn't hurt to have a positive attitude in fighting this disease.

You are right. Having a positive attitude is of uptmost importnace. It dosen't hurt to have a sense of humor about some of the things that come our way. I once had a very dear friend say to me that I took my self much too seriously. So I usuallly don't let things keep me down long. I figure out the irony or the humor even if it is black. then I laugh and I think that it takes away the power of the fear that was induced by a particular diagnosis. I am not always up sometimes I get down but I don't stay there. I can't afford to, I still have many things that I want to do, being ill is just a distraction from getting what I want to do done.

Well alot of good respones! I am a long termer and I have watched many folks go. I can remember starting back in high school alot of my NYC friends passed. I lived in Jersey and would high tail it to NYC any chance I got. I could be gay there! Well S54.limelight,tunnel,Tracks,Saint, Etc.. also had alot to do with it. The clubs the parties and the people whom did not judge. Well I walked into this and we all have to rememebr that drugs are to help our system not to take over the fuction of our systems. The human body is the one thing that labs and doctors can not figure out. I mean if we are all only using a 1/4 of our brain so are they.LOLWhat I mean is we as HIVER"S are the first. Just like when polio and various other things came along. I know why should it be me. Well you chose to go have unpretected sex and get the thing. There has always been a danger of some kind of STD and we all chose to take the chance of getting one if not all of them. Just cause it is now a something we can not get rid of we are upset cause of long term effects.Well my friends life has a long term effect. Yes doctors need to pay more attention to the folks they treat and listen to us whom have the problems.I also know that we have to know ( as kenny rogers says) when to hold em and know when to fold em. Meaning if your doctor is not doing what you want tell him he has to or change . Most of these doctors were still in med school when we got HIV/AIDS so we know what we know. We also have to pay attention to what are bodys tell usI have my own way of things and if my doctors knew they would tell me I am not doing what they feel and I am sure I would be dead by now

[What I mean is we as HIVER"S are the first. Just like when polio and various other things came along. I know why should it be me. Well you chose to go have unpretected sex and get the thing. There has always been a danger of some kind of STD and we all chose to take the chance of getting one if not all of them. Just cause it is now a something we can not get rid of we are upset cause of long term effects.

I do hope the "you" and the "we" in your post is referring to yourself. Some of us very long term survivors may have not have had a choice in the matter. Even still, it read as if we all took a chance and deserve what we got. Please clarify.

Yep...I agree Sharkie. When I got infected, we didn't know what the culprit was. It was stated at one point (around 1981) that a person with AIDS had an average of over 1100 sexual partners in a year. I figured I was safe as could be. Of course, with time and new knowledge, we learned the truth.

My feeling now is that it doesn't matter how you got it, but how you deal with it. Find a doctor you can trust and trust yourself as well. It also helps to make any life changes that you can to improve your chances to survive. Laughter and love can not be discounted as beneficial, but I have also known happy, much-loved people who have still passed on.

It is what it is and it is up to us to make our lives as good as they can be.

If I may add another aspect of this aging with HiV thing:I just turned 50. I have been battling with several of the issues mentioned: Diabetes, depression, neuropothy(hard to stand up at times) Constant Fatigue. I was just diagnosed with fibromialgia. The list go on and on, I won't bore you.

I was recently told by my long term disability!

"I am fine, and I can work full time and everything will be fine."

Excuse me?

They stopped paying me just like that! This happend in April of 2007.

I guess the longer you live, the more pills you take, The better you get.

Fuck Them.

So, here I am, house just forclosed (because of the of income). My blood pressure is 160/93...The writting is on the wall. And the article is in The New York Times.

Now literally "homeless" I have little income to just simply survive. Because my long term didability insurance says "I look good, and you numbers are great.You are well. Go back to work"

I had to wipe out my savings to hire a lawyer.

Do as your DR says, everything will be just fine.They used to always say this.

Why do I have this sick feeling in my gut that this is "The beginning of the end?"

Oh, yeah! The insurance people say I'm going to be fine. I have that on my side.

It is clear to me that depression is harder to fight after 21 years of HIV.I am OK physically. Mainly because I refused the AZT in 1987.. and waited till 1995 and a PCP to start up the meds.AZT is a mean mean drug, but there was no alternative. It caused anemia, severe nausea , neuropathy and so many many more sideeffects...

This article is scary, but is is real.. and haven't we all been forced to look reality in the eyes?

I can only hope that a quick stroke will be my ending.....

love

Herman

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Diagnosed in 1987 and still kickingKivexa (Epzicom),Tivicay once daily

This is interesting. I was diagnosed with avascular necrosis in my left knee a few years ago (along with the other issues I have with my knees). The ortho said that he would not be willing to perform a knee replacement at that time because he was worried I would develop some untreatable infection due to HIV. And it's way harder for me to remember items for an exam in school than what it used to be. When I was younger, I could cram the night before and get 100%. Now, it takes me at least three days of memorizing before the exam, and I don't get 100%. I'm sure my other myriad of diagnoses come into play, but how does that all tie into having AIDS? Yes, there needs to be tons more research.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Be honest, isn't it astonishing though, that society only now seems to start working on these topics?

All this is not new. For two billion years life itself was kind of "used to" die, one way or another - sooner or later, quick of with long struggles of pain and suffering!We all knew, grandpa was ill, but he was old - so that was his problem and the problems of the elderly.Kaposi syndrom? Something no one was really invested in. Heart deseases, loss of memory? Oh well, our grandparents were old and that was/is life.

But all of a sudden there is HIV turning to AIDS. And it happens to young people. Not only a few, but millions... Now we are finally waking up. And what a success is possible?! Kaposi or a lot of other illnesses have been investigated thoroughly, the understanding of illnesses or just plain body functions are being understood now. A lot of progress in treatments has been achieved. HIV people ought to get some sort of decoration for just being there - a living incentive for society to move on and build a better place.From this the entire society - everyone will face severe aging problems/life ALWAYS ends - will benefit.